Adult Outcomes from Toronto and Utah. Then and Now.
Posted Apr 20 2009 11:33pm
After some recent discussion around the performance of autistics in college, I decided to read Szatmari et al. (1989). I was aware this adult outcome study looked at the academic achievements of autistics without intellectual impairment (IQ >= 70).
I found that this 20 year old paper has a lot of other information of interest. Additionally, the population it studied is similar to that of the recent outcome study out of Utah that Sullivan had written about over at LB/RB.
Even though the Utah paper is apparently not yet available, there is some information from it which we can use to compare and contrast. I thought it would be useful to go through Szatmari et al. and see how it compares to the Utah study when possible, and to other outcome studies I'm familiar with.
One limitation of Szatmari et al. is that it was small. They only managed to find 16 autistics who agreed to participate. The Utah study included 41 adults.
General Outcome Assessments
Szatmari et al. doesn't really provide ratings of "good" or "very good" but a fair assumption is that half of the adults would've been given these ratings, which is basically the same thing the Utah study finds.
It also reports that 4 of the 16 (25%) might be considered "recovered." This is how the paper puts it:
If a naive individual were to meet the first four probands from Table II without knowledge of their early history, one might conclude they were essentially normal.
The Utah study reports that 6 of the 41 (15%) no longer had autism diagnoses. As Sullivan notes, we don't know if they have Asperger or PDD-NOS diagnoses.
Employment & Independence
Szatmari et al. finds that 8 (50%) were in full-time employment, 3 involving regular contact with people. Five were living independently, 10 with parents, and 1 in a group home.
In the Utah study, half had full-time or part-time employment. About half lived in group homes or with parents.
Dating & Marriage
Szatmari et al. reports that 4 individuals had dated regularly and had been in long-term relationships. One was married.
The media report of the Utah study states: "A few are married and have children. They have friends or acquaintances."
Predictors of Outcome
The usual predictors of outcome, like IQ, are noted in Szatmari et al. What I wanted to go over are some of the predictors and non-predictors, measured or qualitative, which are not well known but have been mentioned elsewhere.
On early severity as a predictor, Szatmari et al. says:
Nevertheless, the results do suggest that, for this group of HFA probands, early history explained little of the variance in outcome. Indeed, the good and poor outcome groups differed little with respect to early impairments in social responsiveness, deviant language, and bizarre behaviors.
From the Utah study:
While all participants had baseline IQs in the nonimpaired range, there was limited evidence to support the use of other early childhood variables to predict adult outcome.
About the time frame when most gains were observed, Szatmari et al. tells us that:
Parents noted that the good-outcome cases had improved considerably by late adolescence. By this age, parents felt their children were still somewhat shy and awkward but not odd or eccentric.
They have not completely shed the fundamental personality structure of early infantile autism but, with increasing self-assessment in their middle to late teens, they expended considerable effort to fit themselves — dutifully, as it were — to what they came to perceive as commonly expected obligations.
It was not until the early to middle teens when a remarkable change took place. Unlike most other autistic children, they became uneasily aware of their peculiarities and began to make a conscious effort to do something about them.
Szatmari et al. has something to say about the involvement of the parents:
The mothers of these probands were, however, able to advocate forcefully for their child in terms of educational and recreational resources.
What seemed to be an important predictor of success was that whenever individuals and their families were confronted with challenges, they sought and successfully accessed various supports. For example, when families were told to "place" their young children, their parents sought and created alternatives. Some of the families were the first to push for integration in school and used their natural community and family ties to include and support their child.
Unfortunately, we don't have data on college attendance from the Utah study. I will go over what Szatmari et al. finds, and also some data from Kanner (1971) and Kanner (1972).
Eight (50%) of the group from Szatmari et al. had attended college or university. Seven had obtained degrees. The remaining one was beginning his second year as an undergraduate.
I find this quite interesting, statistically. As of 1990, about 42.7% of persons 18-19 in the US attended college ( source ). It was 38.5% for 20-21 year olds. Of course, when it comes to Szatmari et al. we're talking about Canada, not the US. Additionally, the autistic individuals came from affluent families, according to the paper. Diagnosed autistics tend to be urbanites.
Now, as of 2004, about 33% of college students in the US graduate in 4 years or less, 50% in 5 years or less, and 55% in 6 years or less. About 45% take 7 years or more to graduate, or never do ( source.) I think it's remarkable that none of the autistics from Szatmari et al. who attended college had failed school at the time of the study. Only one (age 19) had not obtained a degree yet, but was still in school.
Note that the autistics from Szatmari et al. were not a bunch of geniuses by any means. The average IQ of those autistics who attended college was apparently 102 (range 86 - 110.) This is similar, probably even less than the IQ of the average college student.
They generally did not obtain graduate degrees. One had an MBA. A couple had Bachelor of Science degrees. This is probably not surprising statistically. Plus, again, the study is 20 years old.
College was a relatively adequate environment for autistics, according to Szatmari et al.
Living in residence at university seemed to make a major difference to the probands themselves. It was as if the forced confinement of living with others had a beneficial effect on their socialization. Certainly, this was a time when the probands felt most accepted by their peers. To many, these were their happiest years.
I also scanned Kanner (1971) and Kanner (1972) for mentions of autistics who had attended college. I found 7 such persons, not counting "the gifted student of mathematics killed accidentally and the young man whom we have so far lost track after 1962 when he was in college." Of the 7, 5 had obtained some sort of college or university diploma. One of them had a Master's degree in Economics. One was said to be struggling in general college, but there's no follow-up as to outcome. One was a student, doing well at university, and gifted in Math.
One issue with the Kanner papers is that they were qualitative in their entirety, so it's possible some of the autistics he saw went to college and failed, but he didn't write about that.
When you look at the outcomes of autistics who have a distribution of IQs similar to what you find in the general population, certain difficulties and impairments will be evident: autistics struggle a lot when it comes to marriage, dating, friendships, independence, etc.
When it comes to employment, we know that autistics are under-employed. It's not clear how well the autistics who are employed do at their jobs. Some qualitative data from Kanner (1972) suggests that autistics who grew up in the 1960s and who got jobs did fairly well. It's also not clear why half the autistics from Szatmari et al. were not employed.
As far as college enrollment, there doesn't appear to be much of a difference between autistics and non-autistics of the same intelligence. In fact, autistics seem to do (or used to do) rather well in college, judging by the rates of graduation reported.